McMullin Mary Frances, James Glen, Duncombe Andrew S, de Vocht Frank, Fritschi Lin, Clarke Mike, Anderson Lesley A
Centre for Cancer Research and Cell Biology, Queen's University Belfast, Belfast, Northern Ireland, UK.
Department of Haematology, Belfast City Hospital, Queen's University Belfast, C Floor, Lisburn Road, Belfast, BT9 7AB Northern Ireland, UK.
Exp Hematol Oncol. 2016 May 26;5:14. doi: 10.1186/s40164-016-0043-4. eCollection 2015.
Myeloproliferative neoplasms (MPNs) including the classic entities; polycythemia vera (PV), essential thrombocythemia (ET) and primary myelofibrosis are rare diseases with unknown aetiology. The MOSAICC study, is an exploratory case-control study in which information was collected through telephone questionnaires and medical records.
As part of the study, 106 patients with MPN were asked about their perceived diagnosis and replies correlated with their haematologist's diagnosis. For the first time, a patient perspective on their MPN diagnosis and classification was obtained. Logistic regression analyses were utilised to evaluate the role of variables in whether or not a patient reported their diagnosis during interview with co-adjustment for these variables. Chi square tests were used to investigate the association between MPN subtype and patient reported categorisation of MPN.
Overall, 77.4 % of patients reported a diagnosis of MPN. Of those, 39.6 % recognised MPN as a 'blood condition', 23.6 % recognised MPN as a 'cancer' and 13.2 % acknowledged MPN as an 'other medical condition'. There was minimal overlap between the categories. Patients with PV were more likely than those with ET to report their disease as a 'blood condition'. ET patients were significantly more likely than PV patients not to report their condition at all. Patients from a single centre were more likely to report their diagnosis as MPN while age, educational status, and WHO re-classification had no effect.
The discrepancy between concepts of MPN in patients could result from differing patient interest in their condition, varying information conveyed by treating hematologists, concealment due to denial or financial concerns. Explanations for the differences in patient perception of the nature of their disease, requires further, larger scale investigation.
骨髓增殖性肿瘤（MPN）包括经典类型：真性红细胞增多症（PV）、原发性血小板增多症（ET）和原发性骨髓纤维化，是病因不明的罕见疾病。MOSAICC研究是一项探索性病例对照研究，通过电话问卷和病历收集信息。
作为该研究的一部分，106例MPN患者被询问其感知到的诊断情况，并将其回答与血液科医生的诊断进行关联。首次获得了患者对其MPN诊断和分类的看法。采用逻辑回归分析来评估变量在患者访谈期间报告诊断与否中的作用，并对这些变量进行共同调整。卡方检验用于研究MPN亚型与患者报告的MPN分类之间的关联。
总体而言，77.4%的患者报告被诊断为MPN。其中，39.6%将MPN识别为“血液疾病”，23.6%将MPN识别为“癌症”，13.2%将MPN认可为“其他疾病”。这些类别之间的重叠极少。PV患者比ET患者更有可能将其疾病报告为“血液疾病”。ET患者比PV患者更有可能根本不报告自己的病情。来自单一中心的患者更有可能将其诊断报告为MPN，而年龄、教育程度和世界卫生组织的重新分类则没有影响。
患者对MPN概念的差异可能源于患者对自身病情的不同关注、治疗血液科医生传达的信息不同、因否认或经济担忧而隐瞒。患者对其疾病性质认知差异的解释需要进一步的大规模调查。
